Mayo Moments

Thursday, 31 January 2013

3 Weeks Have Dragged By and No Appointment

I really do think this has been the longest three weeks of my life - with no end in sight.  Despite repeated calls to McMaster, we still don't have a date for Leah's thyroid Fine Needle Aspiration Biopsy.  It seems there is a back up in Diagnostic Radiology and her appointment will be delayed while they "triage" the wait list.

I want to scream and shout and throw the mother of all tantrums!  "What is there to triage, this is an eight year old little girl!  She needs this done NOW!"
But of course I don't, because my more logical self knows that
  • it won't do any good - it might feel good to just let it all out but it won't help
  • there are many people on that waiting list with the same feelings I have
  • because Thyroid Cancer is as her endocrinologist says "the good cancer" or, "If you're gonna have cancer, this is the one to have!"  And this means they won't triage her as urgently as I want
  • the scared mommy side of me really doesn't want to know because then it is real and right now I can still pretend
Right from the start of all of Leah's issues, when I would feel myself sliding into bouts of self pity and "poor Leah", I could give myself a kick in the pants by reminding myself it could be worse, it could be cancer.  When we finally got her MRI back and it didn't show any masses, it was a big PHEW! moment - not cancer.  I have always figured I could handle anything as long as it wasn't cancer.  

Now when I am having a bad day dealing with the doctors or watching Leah have her issues, I automatically start my mantra, "remember, it could be worse it could be cancer....oh wait, it might be!"  Which then starts a whirlwind of thoughts and feelings that just feed off each other.

I need a new mantra.  Something a little more positive.  Today I am drawing a blank, but I am sure it will come to me.  Because really, I have to remember that even it if is cancer, we CAN handle it.  It won't make me throw my hands in the air and give up.  I can't, Leah will need me.

Tuesday, 15 January 2013

Questions and Answers

In response to the previous post, we were asked some very good questions; it made me realize in hind sight that in my attempt to avoid over dramatizing the situation, I may have in fact mislead everyone as to the serious nature of what we are facing.  I wanted to address those questions.

  1. .......You may want to research the side-effects of biopsies before going ahead with one. Did you know that if there are cancerous cells, a biopsy can increase the risk of spreading these cells from this localized area?
  2. My mum had been told she had a thyroid nodule and was told to have a biopsy. I cautioned her about it so she only had an ultrasound instead and opted to take natural means and supplements to get her thyroid back to normal - she'd never seen her doctor so upset with her before!   Anyway, about 8 months later, she took another ultrasound test (one of the safer medical tests) and her tests were fine - no thyroid nodules!
  3. ....what are the doctors going to suggest as a solution? Surgery and thyroid med's for life? 
  4. I just wanted to let you know of other options in case you wanted to investigate them further......

The first question I would like to address is the Fine Needle Biopsy.  Leah will be undergoing an Ultrasound Guided Fine Needle Biopsy.

Fine Needle Aspiration Biopsy (FNA): An introduction

Fine Needle Aspiration (FNA) Biopsy is a simple procedure that involves passing a thin needle through the skin to sample fluid or tissue from a cyst or solid mass, as can be seen in the picture below. The sample of cellular material taken during an FNA is then sent to a pathology laboratory for analysis. Fine needle aspiration biopsies are often performed when a suspicious lump is found, for example a breast lump or enlarged lymph node, or if an abnormality is detected on an imaging test such as x-rayultrasound or mammography. Fine needle aspiration is a relatively non-invasive, less painful and quicker method when compared to other methods of tissue sampling such as surgical biopsy. A cyst aspiration can also be achieved with a FNA, where the fluid is drained from a cyst with no need for analysis........The risks of fine needle aspiration biopsy include the possibility of cancer cells being trailed into unaffected tissue as the needle is removed, but this is rare when the test is performed by skilled practitioners. 
Fine Needle Aspiration 

Is there a risk of cancerous cells being trailed behind?  Yes there is, but looking at the overall picture, I would rather take that risk than the risk of not finding cancerous cells at all.  Ultrasound alone can not reliably offer a diagnosis of whether a nodule is malignant or not.  Without the FNAB we are putting her at a very great risk.  We can not afford to stick our heads in the sand with this.  As it stands right now, Leah has a 25% chance that the biopsy will reveal cancerous cells.  If you had a 1 in 4 chance of winning the lottery you would buy a ticket right? - you would think the odds are in your favour?

Question #2 - It is a medically accepted fact that thyroid nodules in children represent a higher risk.  Both because they are relatively rare in children and because if they turn out to be malignant, it is very aggressive.

  • Thyroid nodules in children present a much higher risk of malignancy that in adults (25% versus 5%) .2  In light of this finding, all thyroid nodules in children must be considered worrisome until proven otherwise using ultrasound (US) and fine needle aspiration biopsy (FNAB).  Nodules bearing low-risk cytology findings need to be closely monitored with interval US to confirm that there is no change in size. 

  • Thyroid nodules are uncommon in children before puberty (1.5% or less). Any nodule discovered in such an age group should therefore be viewed with suspicion and the diagnostic approach should be more aggressive in children than in adults because they are more often malignant than in adults. The mean incidence of thyroid carcinomas in childhood thyroid nodules which were operated on is summarized in Table 1⇓ and shows an overall 26.4% risk of cancer.

Supplements - I spend hours and hours researching a natural approach to helping Leah - as a compliment to the medical interventions, not as a stand alone approach.  I have read books and research papers by so called "experts" and so much is contradictory.  I can do real harm to Leah if I make the wrong decisions on supplements and natural interventions.  Keeping in mind that she is not just dealing with thyroid issues.  She has an ongoing Autoimmune Disease that is affecting many areas in her body and it is a very misunderstood disease and not much is known about it as a whole.  Currently we are modifying her diet, eliminating all soy and goitrogens
  • Goitrogenic foods: Goitrogenic are foods that can affect thyroid function by inhibiting synthesis of thyroid hormones, resulting in enlargement of the gland (goiter). Goitrogenic foods include Brussel sprouts, kohlrabi, turnips, rutabaga, radishes, cabbage, kale, and cauliflower.
She is taking an excellent quality mulitvitamin, Vitamin C and an excellent quality of Amino 3s for brain health. 

As well, she is set to go see an allergist to rule out food allergies and/or gluten intolerance that may be contributing to the high immune response in her body.

She sees a massage therapist to help with the aches and pains from her body's inflammatory response that is so commonly seen in Autoimmune Disorders.

To assist with her nutritional deficits due to a very poor appetite she chooses one of these each day.  She is 10th percentile for weight and 25th percentile for height - she used to be between the 70 and 85th percentiles for both.

PediaSure SideKicks® Clear ImagePediaSure® Image

Question #3 - Leah is already on a lifelong course of thyroid meds.  Her thyroid has already been damaged beyond repair.  Our goal at this point is to minimize any further damage and to support it with the thyroid meds so it can continue to produce the natural hormones for as long as possible.  The current thinking in the medical field is this is the only way to treat it.  Unfortunately I don't accept this answer and continue to look for ways to minimize the immune reaction and therefore minimize the damage to the thyroid.  There are lots of information out there supporting my thinking and we will continue to research this.

And of course it goes without saying, should the biopsy show cancerous cells there will be a surgery of some sort - whether that means a full thyroidectomy or just removal of the left lobe would be decided if/or when necessary.

Question #4 - We are always looking for and open to options, innovations, solutions....anything!  No decision is made without HOURS and HOURS and HOURS of research, thought, prayer and discussion.  I belong to several forums and groups of parents of children with Hashimoto's and groups for adults with Hashimoto's.  This way I can find out what is being prescribed for other patients, what their medical care plans are, what has worked for them at home, what supplements or alternative therapies they are using and so on.

Thursday, 10 January 2013

And the waiting begins.....AGAIN

Happy New Year from the Balints!  I hope this finds you and your family in good health and enjoying the return to school, work and normalcy.

The holiday season was busy and hectic and like so many other families was full of sickness.  That terrible flu/virus/cold thing that everyone you talk to had, hit our house as well.  Each of the kids had it to some degree, as did Paul and I.  Leah was one of the last ones to show the actual symptoms of the "flu" but she suffered from the side effects of her body trying to fight it off for days ahead of time.  On Boxing Day she was reduced to crawling or being carried - she had such terrible vertigo that she couldn't stand.  She had her usual hallmarks of an "episode"; blurry feeling in her head, right eye feeling funny, extremely cold, tired, weak, falling, dropping things and frequent sleep disturbances.  She missed out on fun activities with her siblings and her best friend.  

Her return to school has been pretty good so far, although on Tuesday there were tears, she didn't feel well, was tired and wanted to stay home.  Again we had to encourage her to push through it and hope that it would get better.

On Wednesday we returned to McMaster for another appointment with the Endocrinologist.  When we last saw him, he ordered an ultrasound on her thyroid because he could feel a nodule.  He also stated that any further follow up could be handled by her family doctor and he didn't need to see Leah any further.  Imagine my surprise when the office called to book the appointment!  We had already received the ultrasound report from Leah's family doctor and he had made it sound as if everything was normal.  

Realizing that everything was not normal, I began to do more research.  

By the time the appointment came, Paul and I had already reached a decision on the course of action we wanted the Doctor to take and I showed up for the appointment armed with documentation supporting our decision, prepared to duke it out with them.
What are thyroid nodules?
Thyroid nodules are growths in the thyroid gland, which is located in the front of the neck and controls many critical functions. Most nodules are benign tissue, but some can be malignant, or cancerous. Thyroid nodules are rare during childhood and adolescence, but they can and do occur. There are several types of nodules: Colloid nodule, a benign accumulation of thyroid cells forming one or more nodules on the thyroid gland; follicular adenoma (benign); thyroid cysts (usually benign), small sacs filled with fluid and sometimes with solid parts; Inflammatory nodules, formed as a result of chronic inflammation of the gland; thyroid cancer (typically hard nodules). Some nodules may affect the hormones produced by the thyroid gland, causing symptoms of hypothyroidism (under-active thyroid gland) or hyperthyroidism (over-active gland).

As it turns out, Leah has a pancake shaped nodule in the left lobe of her thyroid that has partial cystic qualities.  The nodule is over 11 mms at it widest section.  It is common practice that once a nodule is bigger than 10 mm, a Fine Needle Aspiration Biopsy (FNAB) is recommended.    

So before I even had a chance to put on my big girl panties and spout research stats, the doctor took the wind out of my sails by advising we proceed with the FNAB.
Fine Needle Aspiration Biopsy (FNAB)
Once the patient is ready, a small, fine-gauge needle is inserted into the nodule. The needle is smaller in diameter than the needle used in most blood draws (usually a 25 gauge 1.5 inch needle). The patient holds his breath while the needle is rocked gently to obtain as much tissue as possible. (The reason for holding the breath is to minimize movement of the structures in the neck.) The needle is then withdrawn and pressure is applied over the thyroid area to minimize bleeding. This procedure is usually repeated four to six times to ensure that an adequate amount of tissue has been collected. After the procedure, pressure is applied over the neck area for 5 to 10 minutes to assure that the bleeding has stopped. The pressure also helps to reduce any swelling that may occur. The entire procedure usually takes less than 20 minutes.

The doctor expects the FNAB to be scheduled within a month (I’ll believe it when it happens!) with the potential of a “pre-op” appointment due to her young age and the possible need of sedation.

He threw a lot of stats and numbers at me, most of which I was already familiar with. 

Here is the Coles Notes version:  

  • Nodules are uncommon in children, however they are upto 4x more likely to be malignant than in adults.  
  • It is estimated between 15 and 25% of nodules in children are cancerous.  
  • He was also very quick to point out that means there is a 75-85% chance that her nodule is not.

So we now begin a very LOOOOOONG couple of months of waiting and trying not to worry.

As always prayers are requested and very welcome!